“A perfect storm”: Autistic experiences of menopause and midlife

Social isolation and past trauma

Prior social experiences and traumas had a profound effect on the behaviours and expectations of participants. These experiences had led to self-consciousness, self-criticism and self-censorship in various social contexts. For many participants, decades of being misunderstood, episodes of burnout and overwhelm, social isolation and bullying and victimization culminated in menopause when they had become so stressed and traumatized that they were no longer able to cope. Several participants also described a lifelong effort to camouflage their autistic characteristics to fit in better socially or professionally; they experienced this as exhausting, and some described it as a contributing factor to their ill-health. Camouflaging also became increasingly difficult or impossible for several participants in menopause, which may have added to the likelihood of being misunderstood: ‘But yeah, just general sense of myself as not fitting in and not, not being able to cope socially . . . that’s always been an issue for me, but it became much worse around that time’ (UKP11).

For some, trauma had additional intersectional dimensions, as with an autistic trans male abuse survivor who felt very alone grappling with past traumas while transitioning through menopause and a late diagnosis of autism. As he stated, ‘I’ve gone through a huge amount in my life and almost every time I was alone. No help. Zero help. And that’s very difficult . . . don’t wish that on anybody. You know?’ (CP13).

Communication gaps and disconnection

Among a number of communication challenges, participants noted a difficulty in breaching the divide in understanding between self and others in general. This led to a sense of isolation and the feeling of going through the struggles of autistic menopause alone. One participant felt like an ‘outsider’ (CP3) interacting with neurotypical people transitioning through menopause because she believed her experiences were different.

In addition to general communication challenges including sensory issues, auditory processing difficulties and situational mutism, some participants noted intersectional barriers such as race and gender that added further layers of bias when they tried to communicate their needs. Many participants described interpersonal difficulties, especially in interactions with non-autistic people and feeling misunderstood as they struggled against assumptions and stereotypes.

Intersections with other life transitions, responsibilities and stressors

Often inherent in midlife is the co-occurrence of major life events and stressful life changes which can be difficult. While some participants grappled with care for ageing parents and children, many others tried to balance work stress and their own health challenges, relationships and financial stability. One participant explained how she became overwhelmed with a variety of issues and symptoms during menopausal onset, when her mother was also diagnosed with Alzheimer’s disease; added together, these stressors were too much:

. . . it was also just an experience of more stuff . . . whereas previously, you know, I could handle the house, the job, the husband . . . And then there’s another thing. And that other thing that happened at the same time as menopause with the increased symptoms was just what pushed me over the edge . . . (CP4)

Similarly, for others, the care responsibilities they had while transitioning through menopause left little room for self-care: ‘by the time I’ve taken care of everybody else, there’s no energy left for me’ (CP1). A large proportion of participants also worked either full-time or part-time, and several described the impacts of menopause on work and vice versa, which led some to career changes: ‘my ability to . . . function in the workplace, which is where I predominantly masked, was severely impacted to, to the point where I often just couldn’t . . . it was quite catastrophic’ (UKP10). Several other participants similarly described no longer being able to camouflage their autistic characteristics at work once they started menopause.

Some participants also noted that brain fog and other cognitive changes made work tasks much more difficult or impossible. As one participant commented, ‘It’s like my mind’s different now’ (CP6). Another described an ‘abrupt’ transition from being capable and reliable at work to being ‘unrecognizable as that person’ (UKP6). Several participants recounted leaving paid employment, switching careers or changing the nature of their jobs. Another struggled with diagnosis and family concerns as well as graduate school, eventually dropping out:

So I had a perfect storm. I had so many different balls to juggle in the air that, you know, on top of the menopause and not knowing whether I was autistic. I had a lot, a lot to deal with. (CP13)

Expectations and preparedness for menopause

Participants described the power of information and, conversely, the disempowerment experienced through lack of access to knowledge about both autism and menopause. They widely perceived autistic menopause to be a distinct phenomenon accompanied by its own challenges. As such, they emphasized the importance of autistic-informed knowledge for those with similar experiences.

Many described struggling with the onset of unexpected symptoms and unpredictable menstrual cycles. The physical fluctuations in symptoms made it difficult to anticipate how they might be affected from one moment to the next. A lack of knowledge about menopause or uncertainty about whether menopause had begun, which stage they were in, or how long it would last was also upsetting. Some experienced perimenopausal symptoms that are not commonly discussed (e.g. heavier menstruation rather than cessation), so they did not initially make the connection between their symptoms and menopause.

Some participants attributed the deficiency of social awareness about the ‘double whammy’ (CP5) of being autistic and experiencing menopause to taboos:

I think our society doesn’t talk about, address, understand women our age in general very well. And so when you have the added dimension of autism . . . There’s no resource, there’s no font of wisdom to tell me how to handle that. And there’s no room in society for it either . . . Because we don’t talk about menopause, let alone autistic menopause. (CP8)

Several participants emphasized the importance of early education for young people about autism and biopsychosocial transition points, including menopause, suggesting that this might help offset social taboos and promote preparedness. Some explained that previous hormonal and social transition periods, such as adolescence and childbirth, had also been tumultuous for them. A number of participants agreed that menopause was like ‘going through puberty all over again’ (UKP10).

However, participants noted that self-advocacy and self-education could be empowering. For example, one participant tracked her menstrual cycle and a variety of symptoms, which greatly helped her understand why she was feeling anguished at particular points. Several participants noted that they had done extensive research on menopause (which was clear from the technical terminology they used). This was partly because they were interested in doing research related to their experiences, and partly because they were not able to obtain the information they needed from practitioners.

Importance of human connection

Many participants noted benefits in sharing stories with neurodivergent allies and autistic support networks. Several had found common ground, community and connectedness around autism and menopause. Participants emphasized the importance of learning from others with similar experiences, highlighting the need for autistic-produced knowledge, and group support: ‘. . . but just being able to talk with each other and share symptoms and how they’re coping. So you don’t feel so much that you were alone’ (CP13). A common refrain within focus groups was that participants were happy to talk to others who understood their experiences: ‘Oh, it’s such a relief to hear this, this is great. Just having that sense of community, having that sense of common cause, that sense of I’m not alone in this. I’m not weird. I’m not isolated . . .’ (CP8).

Pre-emptive factors: anxiety from prior experience, help-seeking fatigue and fear of repercussion

Overall, most participants had negative perceptions or past experiences with healthcare professionals which pre-empted their decisions around whether to seek help for menopause. Many felt there were barriers affecting access to public health services and saw a lack of awareness about menopause generally, and autistic menopause more specifically. Others feared contact with medical institutions. One participant described the threat of institutionalization as a child; fear of repercussions for her career made her reluctant to trust doctors and disclose information about her autism. Another participant expressed similar mistrust of the medical system: ‘the medical gaslighting that I’ve experienced just anywhere, I only really go [to the doctor] if I’m in an acute situation’ (CP2). Similarly, another participant stated, ‘NHS [National Health Service] is just absolute, just trauma, I can’t even go near it’ (UKP1). This reticence was generalized more broadly to other services. One Canadian participant expressed concern that her own autism diagnosis might be used against her by the social workers meant to support her as the parent of autistic children.

Relating the lack of education and social awareness to their experiences with healthcare, several participants believed that their general practitioners (GPs), and even specialists, were ill-equipped to deal with menopause, and that autism was even further out of their realm of expertise. Participants indicated this treatment was particularly difficult for older patients and those not cisgender, White and presenting as male; as they believed many healthcare practitioners espoused a White male bias around autism and seemed to subscribe to the stereotype that autism is just diagnosed in childhood. Participants understood that bias is reflected in medical and healthcare research: ‘. . . there has to be an intersectional lens and there has to be better research, more data about gender and race and neurotypes and all the other factors that might influence menopause’. (CP12)

The struggle to access initial healthcare services and support

If participants did decide to seek out support, they faced many difficulties. Some were put off with gatekeepers, or the first level of attempting to make an appointment. At this stage, participants sometimes felt overwhelmed explaining why they needed the appointment, and feared judgement if they had to interact with someone to schedule it. Having to book appointments via phone was mentioned as a significant barrier. Compounding this initial reluctance was what participants identified as a gap in services and resources: ‘. . . in the UK . . . the access point for everything is our GP, time is very limited. Gaining an appointment is . . . a Herculean feat’ (UKP10). Overall, participants found trying to access services and support effortful and exhausting, especially given the struggles they were already experiencing.

Several participants also noted the long waiting times for assessment and services in public healthcare, and some had paid out-of-pocket for private care despite the high cost. As one participant stated, ‘I’m on a really low income. You know, I spent money that I could not afford on that because it was the only way to get any help’ (UKP11).

Medical issues during consultation and follow-up with healthcare professionals

Once participants had eventually made their way to being seen by a doctor or professional, many felt they had been ignored, misunderstood or had not been listened to or believed: ‘I don’t know if that’s different for other people who are neurotypical, but I get dismissed a lot. They don’t listen to me’ (CP10). One participant, whose long-standing communication challenges and health conditions had worsened, struggled to convince her doctor that she had started menopause. Another participant expressed a very similar experience in which two GPs disregarded their queries about being in perimenopause because of their relatively young age, despite the participant’s severe symptoms. Several participants had learned from experience that they needed to go to healthcare appointments equipped with information, noting the burden of having to educate medical professionals: ‘I know if I don’t start directing things, it’s hopeless. And it shouldn’t be like that because not everyone is going to be able to advocate for themselves like that’. (UKP3). Self-advocacy was not always welcomed by clinicians: ‘There’s so many ways in which patients need to be advocates for themselves . . . But then doctors get really frustrated when anybody has consulted or done their own research’. (CP12).

In extreme cases, participants had received inappropriate care or medication as well as misdiagnosis or conflicting diagnoses, leading them to believe that medical care is unreliable, insufficient or actively harmful. Other participants expressed anxieties at not being able to describe their emotions or what was happening with them physically (e.g. pain), particularly mentioning interoception and alexithymia. Participants described feeling that it was not always possible for them to get clinicians to understand just how close to the edge they were as they struggled with mental and physical health: ‘I was told it’s menopause, it’s not life-threatening, but it bloody is, it’s life threatening’ (UKP6).

Perceived time pressures with doctors also contributed to communication challenges. One participant described the medical system as a ‘mill’ with implications for those who are multiply marginalized: ‘. . . They [doctors] just want to get rid of people. So especially with women or minorities or whatever, you get dismissed more as well’ (CP12). Another participant stated of her GP that ‘You get your seven minutes and you’re out’ (UKP6). Others treated visits to their GP instrumentally, using them only to obtain referrals or refill prescriptions. Some described power dynamics, diagnostic overshadowing and perceived bias with their doctors or clinicians. For example, when seeking autism assessment, one participant described being told by the clinician that there was nothing ‘wrong’ with her; she perceived this deficit-oriented language and the clinician’s attitude as ‘very dismissive’ (UKP5).

Finally, several participants felt that they wanted to learn more or pursue particular treatments like hormone replacement therapy (HRT), but their doctors were not well-informed. One participant, who was experiencing extreme symptoms during menopause, reported being told by the doctor, ‘well, you’re not getting HRT because we don’t give that out to people here’ (UKP9). While past controversies related to HRT may mean some physicians avoid prescribing it, contrary to NHS clinical guidance (National Health Service, 2017), some participants insisted it was necessary for them to survive menopause.

Participants were equally frustrated after they received care. Many found a sense of powerlessness at being on long waitlists once they had finally been referred to specialists by their GPs. Participants with chronic health struggles expressed their sense of helplessness as their symptoms compounded with no real support or follow-through.